Up to 15 per cent of all babies born will require some form of extra care at birth. This means 15 per cent of all excited parents will watch as their babies are whisked off to NICU instead of spending those first moments in their arms.
I am one of those mums. My boys, James and Jack were born at 30 weeks gestation and 34 weeks gestation, respectively. This is my NICU journey.
James’ arrival 10 weeks early
Despite the doctors’ best attempt to delay labour, James arrived quickly and unexpectedly. My waters broke at 30 weeks gestation and I went into spontaneous premature labour. With each contraction, my little boy’s heart was dropping and he was in distress.
Through the chaos of his arrival, there are snippets I will never forget. The sound of “Code Zero” being called over the speaker. The feeling of being pushed out the door to the theatre, like I was in a movie. The intense pain of one of the contractions – so strong it felt like my little man was on his way out, that we were too late.
I was shivering and crying so hard I couldn’t control it. There were nurses and doctors in every direction, but, my husband Scott, wasn’t allowed in the room due to the urgency and general anaesthetic.
The anaesthetist told me to keep my eyes open as long as I could. I knew if I closed them one second too early I would feel them making the incision. When I eventually closed my eyes, I honestly didn’t know whether my baby boy would survive. The whole experience was extremely traumatic and, to this day, I still feel a lot of shock, guilt, and heartache.
But, 20 hours after my tiny baby boy arrived, weighing just 1.5kg, I was able to hold him. And, at that moment, nothing else mattered but fighting for him.”
Life in the NICU
James spent five weeks in hospital growing and learning to feed. His first 48 hours were the hardest as he was born black and blue, and was quickly diagnosed with a rare platelet disorder. He required life-saving platelet transfusions from a tiny pool of matched donors.
We watched him fight for his life inside a plastic box, buried underneath cords and drips and attached to a number of scary machines. We held him for just 1 to 2 hours a day, and only when he was strong enough.
He had multiple blood tests, receive transfusions, oxygen, medications and fed through a tube that went down his nose and into his stomach. The days were long, unpredictable and utterly draining. It felt unnatural and went against every motherly instinct in my body. Nothing could have prepared us.”
In his first 48 hours of his life, James had already endured and overcome more hardship than I had in my lifetime.
He is now three-years-old. He has caught up to his peers and thankfully doesn’t have any long-lasting complications from being born prematurely.
Jack’s arrival, six weeks early
Jack, however, was a little different. Due to the rare platelet disorder, we found with James, I was admitted to the hospital each week for blood transfusions and ultrasounds.
At 18 weeks pregnant, I had surgery for an incomplete cervix. I stopped work and spent the rest of my pregnancy at home, on bed rest. At 34 weeks I was admitted with pre-eclampsia and found to be in pre-term labour.
Jack was delivered via c-section. I couldn’t deliver naturally due to the blood disorder, but it was much more controlled and I was able to be awake this time. I feel as though his birth, although again not ‘typical’, helped to heal me in a way.
Homebound but multiple hospital visits
Although Jack was able to go home after just one week in the NICU, he has ongoing health concerns. In his six short months of life, he has been admitted to hospital seven times, mostly due to respiratory infections. He has a floppy airway and unsafe swallow causing him to aspirate milk into his lungs when he feeds and is currently fed via a feeding tube.
But, despite the ongoing medical appointments, the follow-ups, and the specialist’s visits, he is my happy miracle baby and his smile will melt anyone’s heart.
We will never be able to express our gratitude to the incredible team of doctors, nurses and midwives at the Women’s and Children’s Hospital. They are angels on earth and they saved our boys’ lives.
A rollercoaster ride of ups and downs
Being a mum to a premature baby is a rollercoaster ride of ups and downs. The overwhelming shock and grief, the painful possibility that you could lose your baby at any second, leaving the hospital each day with empty arms and an empty heart – no Mum should ever have to experience this.
But with each passing minute, you slowly come to realise the undeniable strength and determination of a baby born too soon. You start to believe in miracles, and your baby is proof that they exist. You grow a support network of nurses, doctors and other premmie families inside those hospital walls who become your real-life superheroes.”
Although you are afraid and vulnerable every single day, you are part of something truly special. And as time moves forward, you gain perspective.
Every single time you look at your happy and healthy baby who defied all the odds, you are reminded to be thankful. You are reminded to be brave. And you are reminded of how much you have overcome.
Being a mum to a premature baby is not something you ever get over
But with the help of the premmie community, it is something you get through.
I want other parents to know that they are not alone. Having a premature baby is extremely isolating but there’s a huge community of others who have been there before and who understand – and it’s a community unlike any I’ve ever seen.
Reach out and get support. It’s not something you have to experience alone and it’s ok to ask for help.
World Prematurity Day
Premature birth is the leading cause of death of children under five. It is more common than you think, it is on the rise and it can happen to anyone.
World Prematurity Day is 17 November 2019. It’s a day to encourage other NICU mums to these stories, to reflect on these incredible journies, to give hope and a sense of belonging and to celebrate every NICU journey and every brave miracle baby.
To learn more, please visit www.miraclebabies.org.au or www.miraclemumma.com.au.
